Paying it Forward

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Yesterday Boxes of Fun received the 2017 Friend of Child Life Award from NewYork-Presbyterian Morgan Sanley Children’s Hospital (NYPMSCH).

Ten years ago – almost to the day – our family arrived at NYPMSCH. Jack needed a stem cell transplant for a disease we had just learned existed one month earlier. We would end up living at the hospital for months and Jack would be in isolation most of that time. It was hell. One light in our room that always put a smile on our boy’s face, was a box that lived at the foot of Jack’s bed — The Box of Fun. It was the brainchild of my dear friend Kim. It was filled it with gifts and notes from everyone in our lives. Not just fun stuff, but a true reminder that we were loved.

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Jack’s Box 2007

What many didn’t know then was that Kim had a stem cell transplant ten years earlier AND her colleagues at work had made her a box filled with goodies. Kim was paying in forward!

When Jack’s health stabilized and we adapted to our new life, our family wanted to continue the trend and pay it forward. We started making Boxes of Fun for each of the kids on the transplant floor at NYPMSCH. That was eight years ago.

Last year, Anna took over. She and her dear friend, Jane, created a club at Columbia High School and started raising money to fill the boxes. Let’s just say that they put my efforts to shame. They’ve raised unbelievable amounts of money and awareness AND have even expanded their program to Hackensack Hospital. I am blown away by these kids. Boundless energy in their goal to help others — Anyone who’s worried about today’s youth, needs to hang out with Anna and her pals for an afternoon.

Yesterday’s ceremony was sweet, and the award itself needs to be displayed somewhere special – it’s HUGE, but the best part of the day was hearing stories from the Child Life team of people’s reactions through the years – not just the children who have received the Boxes, but the nurses and doctors who have come to expect that their patients will have a pile of goodies to distract them during their stay.

When we got the news that we’d been nominated for the award we were honored, but the truth is that we make the Boxes as much for us as for the recipients. It’s so important to recognize and appreciate when beautiful things are sent your way AND to remember to pay it forward.

Seven days until we hit Jack’s 10th Transplant Birthday. In honor of his birthday, I encourage all of you to take a moment and pay it forward. Make someone a Box of Fun, donate your time to a soup kitchen or food pantry, visit a neighbor who is going through a hard time OR make a donation to Jack’s school —  CLICK HERE. Just do something. Trust me – it makes the world a little better.

Love, Jess

GOOD > BAD

Enough with the hard stuff – let’s celebrate!

A crazy few weeks around here and most of it has been WONDERFUL.

Last week, Jack and I had the honor of speaking at an event for CPNJ (the parent organization of Horizon High School). 150 employees were celebrating 5, 10, 15, and 20 years of service to CPNJ. We were asked to speak representing CPNJ families and sharing a bit about how their team has helped us. My nerves still cause me to jitter a bit when I speak publicly, but overall I think I’m doing a better job. And, looking out at a room full of so many people who have helped our boy, I felt extremely grateful. I did the majority of the speaking, but when Jack joined me on the stage, he really did steal the show. His smile is electric.

 

Then yesterday, we shared our story in a whole different way. Through Jack’s school, we were approached by a Taiwanese television station that is making a documentary about children with special needs and adaptive equipment. A large crew of people and cameras arrived bright an early to catch our morning routine (I took care of some early morning messiness before they arrived – THAT would have been a little TOO real). The crew followed JackO around throughout his entire day, and by the time they arrived back from school, they all seemed like old friends. It’s amazing the connections our silent boy is able to make. The documentary is following children with disabilities from four different countries, discussing different approaches cultures have towards the special needs community. It’s scheduled to air in Taiwan in the Fall. They promised to send us a copy. I can’t wait to see our boy on the screen (and to see if my need of highlights is distracting;-).

 

It’s not just our boy who has been getting some attention. Anna received a wonderful invitation last week. On Monday, Boxes of Fun is being recognized as a recipient of the Friends of Child Life Award at New York Presbyterian Morgan Stanley Children’s Hospital. We’ve been making Boxes of Fun for the children on the Bone Marrow Transplant floor at the hospital for eight years. Last year, Anna asked to take over and started a club at her school with her dear friend, Jane, to help raise money and fill the boxes. No surprise, they dove right in and have not only raised enough money to extend the program to Hackensack Hospital, but they have raised awareness for both Boxes of Fun and paying it forward. Kids these days . . .

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Our lives are complicated. Big things like fighting with Social Security and little things like Jack developing a habit of soiling his bed overnight. Some days I feel like we are dealing with more than our share of sh*t, but when I step away and look at the big picture, I am reminded that the good still outweighs the bad by a long shot.

I am beyond proud of both of our children. Each with such different lives. Each extraordinary.

 

Love, Jess

 

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Dear Social Security Administration,

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Dear Social Security Administration,

Stop wasting our fu*king time! I’m begging you. I’m coming close to a breakdown and my family needs me. I appreciate that there are people who wish to take advantage of the “system”, but I assure you — we are not one of them. AND, I realize that there are people who might not clearly qualify to receive Social Security benefits. Unfortunately, Jack more than qualifies.

1.) Are you working? No
2.) Is your condition “severe”? Yes. I find this almost insulting to answer.
3.) Is your condition found in the list of disabling conditions? Jack has five of these conditions.
4.) Can you do the work you did previously? Never worked.
5.) Can you do any other type of work? Jack cannot bag groceries, shred paper or walk down the street without someone holding his hand. I’ve often thought he would make a great professional hugger, but I’m not sure that it would pay the bills.

Several months after filing for Social Security benefits, Jack qualified and you sent us a shinny “Award Letter” (that’s really what it’s called – nuts) with his first check. The next week, you sent a letter that it was time to review his case to see if he was still disabled under the disability rules for adults.

I know that there is a need to reevaluate a person’s eligibility every so often, but 10 days after receiving the Award Letter seems ridiculous. I assumed it was a mistake, but after waiting on hold with your offices for over 90 minutes, I was told that I did need to return to your offices to go over Jack’s updated information (updated?). Then, you insisted that I bring my son to attend the meeting where I needed to once again describe his limitations in detail – THAT is cruel. Only made more cruel because we were forced to sit in a waiting room for 5 hours before having that uncomfortable conversation.

At the end of the review, the woman behind the glass (now I understand the need for the glass) said that we would hear within a few weeks if Jack still qualifies for his benefits. In her defense, she did preface this by handing me a tissue and saying, “I am sorry that I need to say this . . . ”

I’m so proud of where our family is ten years after ALD crashed into our lives. We are strong and thriving, but it’s days like this that make me want to crawl into a hole and scream.

Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled.

Is that better? Should I say it just one more time?

Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled.

No Love Here, Jess

P.S. I promise to write again tomorrow and share a bunch of good news and funny stories. We do have a lot to celebrate right now and that should be my focus.

And the Winner is . . .

Smack in the middle of remembering the hell we went through ten years ago, we got a beautiful reminder of where we are now.

THIS is where we are now — We are winning the GOLD!!!!!

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This amazing day was thanks to the Special Olympics and the greatest school on the planet – CPNJ Horizon High School. Their love, support, training and encouragement helped Jack hop his way to the finish-line!!

If this video made you smile (or cry happy tears), please consider making a donation to Jack’s school.

https://cpnj.donorpages.com/WWCHorizonHighSchool2017/JesseTorrey/?t=636288010860612211

Love, Jess (proud mama)

P.S. It’s not really about winning, it’s about being able to play the game. Thanks to the Special Olympics and Horizon High School – Jack was able to play the game!

P.P.S. It is kinda fun to win sometimes;)

Ten years ago . . .

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2007

What were you doing ten years ago?

Ten years ago our family was in limbo. We had just been transferred from our local hospital to Columbia Presbyterian Morgan Stanley Children’s hospital in New York City. Our lives were standing still as we waited for doctors to figure out what was going on in Jack’s brain.

Seven days earlier, we had gone for an MRI so that we could rule out any significant neurological issues. We were told immediately following the “routine MRI” that it did not rule out anything. Instead, the MRI had confirmed that Jack had significant damage to his brain.

That was April 20th, 2007.

It would be ten days before we were ushered into a small conference room and introduced to the word Adrenoleukodystrophy. Those ten days were surreal.

Waiting is brutal. Although we tried to be optimistic, the doctors were not able to mask their concern. We knew that a diagnosis was coming and that it likely would be bad news. Jack was only eight-years-old and Dan and I both needed to play the role of calm parents, but in the stillness of night our fears would crawl out. There was very little sleeping for us during that time. The “unknown” causes the imagination to spin, often landing on the horrifying or the absurd.

We all know what happened. That we did get a terrible diagnosis and then lived through a nightmare before finding our way to a new life full of challenges. As we approach the tenth anniversary of Jack’s diagnosis and stem cell transplant (his other birthday), I can’t help but relive those days. I can’t help but remember where we were ten years ago. Who we were ten years ago. Bear with me as I spend the next month remembering and sharing.

Sharing has helped me survive the last ten years and reliving these memories is actually helping me to appreciate that we didn’t just survive that period, but we have moved incredibly far since that time. Of corse, I have my moments wondering what life would have looked like without Adrenoleukodystrophy crashing in, but mostly TODAY I am feeling grateful.

Jack survived. His life is complicated, but his quality of life is wonderful. He is happy and stable and manages to bring joy wherever he goes. Anna survived. She runs through life like she runs down a lacrosse field – determined and strong. I’m not exactly sure where she is headed, but her life is going to be extraordinary. Dan and I survived. We are not living the lives we imagined, but I can honestly say that we are closer now than we’ve ever been. I know it sounds cheesy, but he’s my best friend.

Our family has also managed to surround ourselves with friends who hold us up when we need it and encourage us to celebrate the good times (wine and dessert flow often). And, our extended family is incredible. We’ve just gotten to share time with both the Torreys and the Cappellos and we are all feeling incredibly blessed.

For a VERY unlucky family, we are really f*cking lucky;)

Ten years ago our family was living in limbo. Waiting for news that would forever change our lives. Today we are in control. Perhaps not able to control what tomorrow will bring, but in control over how we will face today — AND today is a great day!!

Love, Jess

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Today (not really today, but this year)

Special moms CAN get sick

Last week was tough. It involved long needles and lots of waiting.

I went for my annual mammogram. It was followed by a lengthy sonogram and then a unnerving talk with the radiologist. Two days later, I returned to the hospital for a needle biopsy.

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As I was lying on the table having trouble breathing through the pain, Dan sent me a text from the waiting room – You are strong. You are brave. You are fierce. So sweet, but at that moment I felt anything but those things. I was crying even before the doctor started the procedure, wondering how on earth I would deal if I really was sick. A cold is tough for me. Anything that eats up time and saps my energy, takes me away from my responsibilities.

Special moms can’t get sick.

Like most women, I go to my annual mammogram with a tiny bit of worry, but mostly it’s just a nuisance and a pain (literally – no one likes their breasts to be flat as pancakes). Last week’s mammogram results hit me like a brick, reminding me that life can change quickly and nature can be a bitch. She doesn’t care how much you have on your plate. She doesn’t care if you are terrified of needles/pain/blood. She doesn’t care if your family has already spent too much time in hospitals. She doesn’t care if your husband has already lost his mother to the disease or that your friends have already done their share of suffering from illness.

Bad things happen to good people. Life isn’t fair. Not everything happens for a reason. AND special moms CAN get sick.

After several days of feeling sorry for myself and trying to picture myself bald (not a pleasant image), I got the call that my biopsy was negative. No cancer. I do need a MRI that I still don’t really understand, but my doctor isn’t concerned. My boobs (and hair) are here to stay.

We are all breathing a sigh of relief, but it has gotten me thinking about my health. I don’t take perfect care of myself. Sure — I do my share of 10,000 step days and eat plenty of green things, BUT I drink more than I should, I eat meat and dairy and gluten (I love gluten). I pay monthly for a gym I never go into and I’ve never even signed up for a 5/10/20 K run.

I have always tried to balance healthy choices with fun. Figuring that life is short and complicated and should be enjoyed when possible. I always find any excuse for the extra glass of wine or slice of cake. Last week scared me. I’m starting to think that as I approach the big 5-0, I need to focus more on the long road and being there for my family.

Special moms can get sick and nature can be a bitch — I really don’t want to add to the odds.

Love, Jess – (written while enjoying some green tea and kale)

P.S. To all of my friends and family that have fought breast cancer. YOU are my heroes! That one little biopsy nearly sent me over the edge (honestly, I nearly passed out when I saw the length of the needle).

Five Stages of a Day at Social Security

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I spent Wednesday at the Social Security office in Newark, NJ. It was an emotional day.

Denial

As I walked into the large waiting room, I was surprised that it was so crowded. How could every seat be filled on a Wednesday in the middle of the month? Deep breath. This is going to be fine. Today will be the last time I need to come to this office. I have everything they might need right here in my green Whole Foods bag filled with paper.

Ninety minutes later, I hear my number, I grab my green Whole Foods bag and race up to the counter. I give Jack’s social security number and the woman behind the counter starts typing frantically on her keyboard. Five minutes later she looks up, “I’m sorry Mrs. Torrey. It looks like you need to speak with Ms. @#$%. I can make you an appointment for next week.”

Anger

“Are you kidding me? I’ve been here for ninety minutes already and I called Ms. @#$% 17 times in the last two weeks. 17 TIMES! She has not returned one of those phone calls. THAT IS WHY I AM HERE! I can’t come back next week. I need to see someone NOW!”

I’m not sure if it was my strong words or my teary eyes that got to her, but suddenly the woman behind the counter told me to wait, went back to her keyboard, typed in some magic, and then directed me to another desk. I was introduced to the allusive Ms. @#$%.

Hopeful/Bargaining

I took a deep breath and put on the sweetest smile I could muster, “Thank you so much for seeing me Ms. @#$%. I’m sorry that I have been calling so much, it’s just that we are anxious to get this done. I promise I have ANYTHING you might need here in this bag.”

As I held up the green Whole Foods bag, she started shaking her head. “I just don’t think we can get this done quickly. I need a little more information from you and to have our lawyers look at your son’s case again. I will get back to you next week.”

Depression

Tears are now rolling down my face and I set down my green bag, “Next week? You can’t understand how complicated our lives are. My son turned eighteen last summer. We’ve been working on this for eight months. He should be worried about getting accepted into college this year – not whether he qualifies of SSI.”

The word “college” really got me going and I sat down with my head in my hands, “My son qualities for Social Security. He’s disabled. YOU know that he is! We’ve shown medical records and you have his school information. He will never work a day in his life. It’s not that he doesn’t want to – he can’t. HE can’t do anything on his own. We have given you all our his information. We have followed all the rules. We have filled out all of the paperwork you asked for. How on earth do you not have an answer?”

Ms. @#$% sat looking up at me and didn’t seem to know what to say. She turned around and I was worried she was going to call security, but instead she came back with a box of tissues, “Mrs. Torrey I’m going to get started on this right now. Just let me see your guardianship papers and the other account information we discussed. We are going to find out as soon as we can how to proceed. What is your cell number? I will call you as soon as I hear anything.”

I was shocked. Not prepared for her to be so helpful. I opened my green Whole Foods bag, pulled out the paperwork she asked for and said “Thank you.” There was nothing more for me to say. This is our life. It’s filled with paperwork, disappointments and reminders of what could have/should have been.

Without another word, I stood up, grabbed my green Whole Foods bag and turned around to walk away. I cried the whole way home and then went into the house and cried some more. I called Dan and cried. Then I called Mymom and cried. Once all the tears were done, I took a warm shower and started my day again.

I needed to pick up Jack early so that we could go watch Anna play lacrosse. As Jack and I made our way to the field arm in arm, I realized my mood had completely turned around. Our life is not just filled with paperwork and disappointments – it’s also filled with sunny days, fun games and magical hugs. THAT should be our focus.

Acceptance

Love, Jess

UPDATE: Ms. @#$% called yesterday at 4:59 pm. Jack has been approved for Social Security. Before I hung up the phone the tears started flowing again. She must think I am nuts.

Medication or Menace? (the answer for us is clear)

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Another week, another article – this time in the Columbian (The Columbia High School Newspaper – our district supports the Torreys)!

When I was approached by a student at Columbia High School to be interviewed for an article about medical marijuana, I did pause to make sure my family was on board. I have shared it here before, but The Columbian is a different audience. Anna is a junior at Columbia and I didn’t want her to feel uncomfortable with me sharing our story with her classmates. She had two comments, “You share EVERYTHING with EVERYONE – I’m used to it. And, why would I care about people knowing Jack uses medical marijuana? It’s medicine.”

As always – Anna’s right. I do share a lot. I share to help me process what’s going on in our lives. I share to help other special families see that life does not need to be defined by disabilities. I share so “non-special” (is that a thing?) families can see that us special folks aren’t really that different. AND I share to spread the word about what works and what doesn’t.

Medical Marijuana has worked for Jack. It helps him focus and relax and eat Cheetos while watching bad TV – I’m kidding about that last one. That’s one of the problems – marijuana/mary jane/pot/weed/ganga/herb/cannabis – whatever you call it, it has a bad reputation. Many people categorize marijuana as simply a recreational drug and discount all of it’s medical benefits. People have their image of “refer madness” and have trouble wrapping their brains around the fact that it is a far superior and less dangerous drug than many medications that live in most medicine cabinets.

I expected some judgement from older generations about using marijuana for medicinal reasons, but I was startled to see that even high school kids seem to have a hard time excepting medical marijuana as a real medication. 54% of Columbia High School students interviewed for this article did not think it should be allowed to to treat illness on school grounds. I find that shocking. I do hope this article helps to educate and open people’s mind to new alternatives for treating people with nerve pain, spasticity, MS, cancer, seizures, glaucoma, etc.

Clearly it’s time for marjiana to find a good public relations team. Jack would be happy to be a spokesperson.

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Love, Jess (Pot Mama)

 

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Trying to be Duct Tape

Look what Anna stumbled upon while on our School District’s website:

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In case you missed it – check this out!

 

Jack and I have also had the pleasure of speaking to several classes at South Orange Middle School and are scheduled to speak at an event for CPNJ, a Clinton School fundraiser and a few book clubs. Never did I imagine speaking being part of our journey, but here we are.

I was talking with a friend last week who has a child going through a difficult time with his own challenges, and she said, “I can’t wait to be on the other side of this. I can’t wait to be in a place where I can help other families.” All I could say was, “You’ll get there. It’s awesome!”

We could have reached this place and just lived our new normal, but our family was eager to thank everyone who helped us along the way (our duct tape). I’ve never been great with “thank you notes”, so instead we chose to thank our duct tape by paying it forward – by trying to BE DUCT TAPE.

Whether we are delivering Boxes of Fun (Anna and her Columbia High School friends have taken over, but Jack and I still deliver) or talking on the phone to a newly diagnosed ALD family or speaking to a group of young people about kindness – it’s confirming that we are on the other side AND it’s our way of thanking all of you.

I don’t believe that nature/life has a perfect plan for all of us – I’ve witnessed too much to make sense of that as a reality. What I do believe is that we all have the power to make the most of the lives we are living. I might not always make the best choices, but I will always do my best to help others. If our family can be a little bit of duct tape for someone else, we have done our job.

 

Love, Jess

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I’m a Weathermom

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We were predicted to get 18- 24 inches of snow and winds of over 50 mph yesterday. We ended up with about 9 inches and the winds never turned into much. As the storm wound down, people started questioning the meteorologists and complaining. I always find myself on the opposite side of that argument. I feel sorry for anyone who is trying there best, with the information they are provided, to make a call.

Perhaps it’s because I feel like a weatherman (mom) myself. I do the best I can with the information I am given, AND I don’t want people to judge me.

Taking care of Jack is like trying to predict a winter storm. You know when all the elements are setting themselves up for something, but you never really know what’s going to happen until it’s arrived. All you can do is prepare for the worst-case-scenario and cross your fingers. Sometimes you end up looking like you’ve overreacted.

Sunday morning Jack woke up running slow. After a super fun night celebrating a friend’s 50th birthday and a Madmen party raising money for our school district, Dan and I also woke up running a little slow. We ate breakfast without our usual lively morning routine. Jack seemed rather sullen and Dan and I noticed that Jack was not swallowing any of his food. We did all our usual checks to see if there was anything in our forecast – temperature, throat check, press belly. Everything looked okay, but we did give our boy some extra hydration and set him up under blankets in front of his favorite show. Not laughing to his Impractical Jokers should have heightened my concern, but I was a little distracted by my throbbing headache, so I just continued on with my day.

Luckily we didn’t have much on our plate so we were able to hunker down. We kept an extra eye on Jack and his mood. There was one hint that something was brewing when a diaper change lead to a double shower, but we were hoping it was an isolated squall.

I finally motivated and went on my daily walk around 5 pm. I was busy listening to my podcast (Missing Richard Simmons – so good) when Dan called, “Get home quick. Jack needs to go to the hospital.”

Two dogs, ill-fitting boots and a mom on a mission, I ran back to the house. Jack had thrown up all over the den and was shaking. His color was off and his eyes were bloodshot. It looked like a category 5 storm was going to hit. Within a few minutes, we were packed and loaded for the hospital.

As soon as we walk into the ER, Dan and I both turned into crazy people. When we see a storm brewing in our boy, we need everyone to stop what they are doing and focus. “Jack has Adrenoleukodystrophy, Addison’s Disease and Epilepsy. He needs 50 mg of hydrocortisone and IV fluids NOW! If a seizure starts, we’re in trouble!”

When they didn’t find us a room within ten minutes, I sent Dan in. I am not sure what he said but we were ushered into a room within seconds. Again, we started screaming at anyone who walked into the room, “What’s taking so long? We need an IV placed now!”

Long story short – It didn’t get that bad. Jack did get his IV hydration and his 50 mg of Hydrocortisone. His color came back quickly and he even managed to flirt with a nurse or two. There was no seizure. Jack came home with us three hours later, feeling a great deal better. All the nurses and doctors seemed happy to get us out of there and I’m pretty sure I saw them rolling their eyes at us as we quietly thanked them and walked out the hospital doors.

So yes, we looked like crazy, paranoid parents. But sometimes you can’t risk not sounding the alarm and putting up the storm windows.

Love, Jess
P.S. Jack is still sporting a snotty cold, but his spirits are back and he is enjoying his snow days!